Thread 13: autism and any other additional needs A/W ‘23

[openupmyeagereyes]

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
https://www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
https://www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
https://www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
https://www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
https://www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

@carriebradshawwithlessshoes could the EP be asked to look specifically at the difference between DS in a group setting and DS with a trusted adult?

For that to work school would have to assign him a consistent 121 and he'd have to spend a lot of time only with the 121 - ie not in class with 121 - before the EP assessment.

What I mean is - you shouldn't be a passive consumer of the EP assessment. You should be able to shape what they test, what they look at. E.g. Are they trained in working with NV kids? Can they assess difference between in and out of class? School might say 'yeah, we can't do that' but then you have leeway to say 'well, the report ain't worth much'.

@carriebradshawwithlessshoes I found that an assessment with the EP was a real chance for me to ask for some guidance for the school - I specifically asked them in their ‘pre’ forms to give very clear guidance to the school for the best learning environment for DS and she gave some great points to them. So even though it’s been commissioned by the school, you can really push your concerns to them as they will surely ask you for your input.

@openupmyeagereyes yes I agree with the small tiny steps approach, at times I wasn’t sure that DS would be able to use the toilet ever, or tolerate teeth brushing, or use words. It’s quite hard on our mental health I think being able to try and hold the bigger picture, so even 3 seconds tooth brushing building up was amazing (and I did try all the OT suggestions!). Sorry this isn’t really about tooth brushing! It’s that the progress I think is such hard, patient work with many kids, they need to feel safe enough. DS has always gone to a SS but they weren’t as good as progressing either so can understand @carriebradshawwithlessshoes concerns.

I think SalmonWellington makes a good point about you helping to direct the assessment, rather than having it decided for you. Likewise, with the AR. Maybe it could be less about the setting and more about what ds needs to access learning, whatever that looks like for him. So maybe you argue for ft 1:1 to do more intensive learning and help keep him regulated. It may only be needed for a couple of years and it’s likely to be cheaper for the LA than an EOTAS package or an independent specialist school. The focus of the AR needs to be what does ds need to successfully access learning. With no blame by the school on him or this or that. It needs to be proactive.

ToastMarmalade exactly. Building up from 3 seconds is brilliant. Having the patience to understand that that 3 seconds is progress.

Thanks some really good points. School have not intimated that I get any steer/ input. It was.. the EP will go in on x date to assess DS in school. She will spend the morning there. Please can I and DH attend school on y date to discuss her findings.

Open, re your situation it could still have been upsetting for eg if she had said DS had a LD which meant he was not academically good enough for this school. I’m not saying that’s right but wasn’t it a risk? Maybe you feel not. With DS I’ve been burned so often when you open a can of worms what comes out…

Well, for a start EP should assess DS at school and at home.

Well it would have been upsetting, but if he has LD’s then he has them and better to know IMO. Not knowing doesn’t change the reality, it’s no different to his autism assessment. I’m still not sure he doesn’t have a mild LD, she didn’t say. She did say he was in the right school. There is a real mixed bag of kids here tbh.

I don’t think EP’s routinely assess at home?

Don't know about routine, but our private assessment did home and school. In Carrie's case difference between home and school (or with Carrie and without) so big that assessment should do both.

That’s really interesting as he is absolutely a chameleon at home or school. That said he is completely different in school when I’ve polled up which is weird. They have always said I’m the reassuring factor. Or I wonder if it’s more simple and he knows he can play up more with them or perhaps they aren’t as firm? I don’t know.

anyone been battered by storm debi btw? I’m trying to rescue my almost over next doors hedge trampoline… 😬😬

I think that the OT meant that DS's concentration in the therapy room was one of the worst she had seen. Which I think is likely because of the projector screen. Unfortunately this is fixed to the room - it is the screen going up and down he is obsessed with not the projector itself unfortunately. The OTs have another office which is 40 min drive from us (compared to 25 mins to yesterday's venue). I am going to see if the other therapy room has a screen and if not see if we can go there. If there is a projector screen, roller shutter door, garage door etc DS can literally not think or look at anything else.

I know it's scary Carrie. I just find my DS such a puzzle at times that I just hope one of these professionals can offer new insights/strategies.

Re therapy etc in SS the LA has already said that if I get the SS place for DS that the OT will stop - not that it has been reinstated yet (don't get me started on that!)

DS just had a session with the Family Hub person. I am not sure how much it will work for him as there is a lot of talking about feelings. He was chatting to DS in the dining room whilst I was with DD in the living room (and eavesdropping on DS's conversation). It was quite striking how DS's view of the world differs from reality (or rather mine) eg when he was saying who is friends are. But the more worrying aspect was when he was asked what made him angry, DS's response 'fighting with Mum'. Later I asked DS to tell me more about it and he said when you block me and then demonstrated putting his arms across himself in a defensive pose. So, I don't really know where to go from there - if me defending myself against being hit by him makes him angry..I am tired

@dimples76 would your DS be able to take in if you talked about role reversal - like if you said, OK what if someone was trying to hit you and you blocked your arms - what is OK and how would that feel for you? And if he feels angry, well that’s OK sometimes but what is not OK is to hit, ever.

@dimples76 when he says angry, is he good at labelling feels or could he mean more upset / general negative emotion? I understand why hearing that wouldn’t be great for you tho. Did you have a separate debrief with the family hub person/ do they share notes or anything?

Yes @Ahna65 agree I have had a fair share of well meaning professionals/SLTs/teachers etc want to talk about feelings with DS, who has an intensive dislike on labelling his feelings in a negative way, or any way really. Their ‘discussions’ with DS usually backfires, or DS thinks he ‘has’ to be angry or sad and he gets quite confused. It just ends up in a muddle. Esp if it’s about him feeling angry and lashing out - the last thing he wants to do is revisit it with someone who he hardly knows. I think opening up that discussion with a child is incredibly sensitive work, and I’m not sure if it works unless they have really got to know your child.

dimples are you able to get some advice from the guy who does the sessions on a good way to respond?

It’s possible that ds just isn’t linking his behaviour to your body language. He’s naturally perceiving it as negative, because it’s defensive, but not understanding the cause and effect. Emotions are complex and SN kids just struggle with them.

Does anyone know if a school can off-roll a child not yet of compulsory school age? Had a long-awaited chat with the SENCO today and she said my DS is a 'unique case' because he's not of CSA until summer term '24.

He's currently been moved back to their adjoining nursery as he just couldn't cope being completely unsupported in the Reception class for 2 hours a day. Since moving back it's like a switch has been flipped and all the negative behaviour he was showing is gone and he's enjoying attending. He's still only doing 2 hours a day but the SENCO said that she'd need to ask their academy SENCO if he could stay in the nursery when I asked about increasing the hours as he was coping well. She said he legally needed to be in an EYFS classroom, is this true?

I'm now realising how awful the school is. They're named on the draft EHCP which I approved in September and they rejected it saying that they 'weren't able to meet his needs' which has resulted in a huge delay in the EHCP funding for support. I don't understand how the school can reject the EHCP and leave him with no provision at all to the point that his attendance has now completely broken down. I've got this bad feeling they're going to try to off-roll him and get me to fund the nursery hours due to their failings.

LittleCoffeePot I could be wrong but I’m not sure anyone here has enough knowledge to advise you. You are probably better to make a separate thread. BlueBrick (which I think is her current name change) is the most knowledgeable about this sort of thing.

It sounds a tricky situation so I hope you can get some answers.

@LittleCoffeePot also ask in the Goose and Carot sen chat on the sen chat board. So many lovely people and lots of extensive knowledge.

@LittleCoffeePot Maybe contact IPSEA and ask their advice - I think if other kids can access school, and yours cannot because of their SEN, then whether compulsory school age or not you would have a case to argue? Not a professional or legal opinion though just my view. On the other hand, if your child is very happy in one environment the nursery and not the other, then that would be strong argument for similar environments - it’s quite difficult to ‘make’ a school which doesn’t get your child, to get them so I’d look at alternative provision.

@LittleCoffeePot is he summer born? It is legal to delay starting a summer born child (regardless of SEN) by a year, although this would normally be done before they started and it would be the parents that requested it. Not sure it's legal for a school to insist. Would you be happy for him to stay in nursery for the year? If so it would give time to get the EHCP and look for a more appropriate setting but you'd have to check if there were any implications further up like having to skip a year somewhere.

Coffeepot what has happened to the EHCP now? Did the LA finalise with his current school named? It seems to me if he is happy at the nursery then it would be good to send him there FT whilst you explore other options for Reception starting in September. My DS is Summerborn and I started him at CSA - now he is in yr5 it has become a bit of an issue. My LA have stated (to me completely irrationally) that if DS is going to mainstream secondary then he can move at the end of yr6 but if I want special he has to move at the end of year five. There was an article published on Special Needs Jungle last month about the unfavourable treatment of children with EHCPs who started at CSA. There is also a Facebook group 'Admissions for Summerborn Children with SEN' that is worth joining. By the way, the current fight about this doesn't make me regret delaying DS's school start, it was the right thing for him and I am confident that we will sort it out.

Yesterday was a busy day. We had a paediatrician appointment re DS's epilepsy (no probs there). So the plan is to start weaning him off the epilepsy meds next Summer. The Dr was asking about CAMHS etc. I mentioned how DS still just has the diagnosis of global developmental delay. He asked lots of questions re DS's abilities then said, right I have changed it to learning disability - but he said it wasn't his remit to categorise as mild, moderate or severe. I wasn't quite expecting that (yes the diagnosis but not in that moment).

It was good news on the emails as I received funding from a charity, Parents in Need, £750 towards an EP assessment for my appeal and the Family Fund towards a semi-recumbent trike for DS.

dimples great news on the funding. I’m sorry the paed appointment ended with that change in diagnosis when you weren’t prepared for it. Maybe it gives weight to your request for a SS place though.

It was what I wanted Open - I was just thrown by it. The school I want says it takes pupils with mild and moderate learning disabilities and ASD - I do think that it's the right match. I think probably moderate LD (and ASD and ADHD).